Yu kin wɔri, sɔntɛm yu kin ivin fred, bɔt aw yu pikin de gro, mɔ in ayt. Na nɔmal tin fɔ fil dis kayn we as mama ɔ papa we de liv wit wan sik we dɛn kɔl Achondroplasia. Bɔt nɔto yu wan de. We di tin dɛn we dɛn dɔn lan bɔt mɛrɛsin dɔn go bifo, naw nyu tritmɛnt dɛn de we go ɛp fɔ mek dɛn sik dɛn ya. Tide, wi de tɔk bɔt wan mɛrɛsin we dɛn kɔl Voxzogo, we dɔn briŋ dis kayn nyu op, spɛshal fɔ pikin dɛn we gɛt Achondroplasia.
Wetin rili na akɔndroplasia?
Fɔ tɔk am simpul wan, Achondroplasia na wan jɛnɛtik kɔndishɔn we kin mek pɔsin gɛt dwɔf. I kin afɛkt di we aw pikin dɛn bon dɛn de gro, mɔ di lɔng bon dɛn (di wan dɛn we de na di an ɛn leg). Na wan sik we nɔ kin apin so ɔltɛm, i kin apin pan lɛk wan pan ɛvri 15,000 to 40,000 pikin dɛn we dɛn bɔn.
bכku tεm, dis nכto sכmtin we dεn gεt frכm di mama εn papa, bכt na tin we de apin na di pikin in כwn bכdi bikoz fכ nyu jεnεtik chenj (mכtεshכn). So nɔ fil gilti fɔ dis. Dis kכndyushכn kin kam wit כda hεlth prכblεm dεm we di pikin de gro, lεk fכ fat, infεkshכn na in yes, εn prכblεm wit di nεv dεm na in spayna εn bren.
Bɔrku kɔmɔn sayn dɛm de wae yu kin si pan pikin wae gɛt achondroplasia.
| Di pat na di bɔdi | Di tin we pɔsin kin si |
|---|---|
| An ɛn fut | di an ɛn leg dɛn shɔt we yu kɔmpia am to di ɔda pat dɛn na di bɔdi. |
| Ed | Fɔ gɛt ed ɛn fɔrɛst we big pas di avɛrej. |
| Nos | Fɔ gɛt nos we flat. |
| Spine | We yu si wan kɔba kɔba spayna. |
| Leg dɛn | Bow leg dɛn. |
Aw Voxzogo de wok?
Fɔ ɔndastand dis, wi nid fɔ lan smɔl fɔs bɔt di plet dɛn we de mek pɔsin gro . Tink bɔt dɛn plet dɛn ya we de gro na di ɛnd dɛn na wi lɔng bon dɛn as di ples usay dɛn kin put nyu asfalt ɔltɛm we dɛn de bil rod. Dɛn mek dɛn wit wan strɔng, fleksibul tisu we dɛn kɔl katilej. As pikin de gro, dis katilej kin tɔn to bon, ɛn di bon kin lɔng. We di pikin dɔn ful-ɔp, dɛn plet dɛn ya we de gro kin lɔk, ɛn di ayt we i de gro kin stɔp.
pan pikin dεm we gεt achondroplasia, wan mכtεshכn na di jin dεm (DNA) de disrupt wan pan di bכdi in mεsej-transmit sistεm dεm. tu mεsej sistεm dεm de na wi bכdi we de afekt di bon dεm we de gro:
1. Sistem we de mek di bon dεm gro.
2. di sistεm we de ridyus (stכp) di bon dεm we de gro.
insay achondroplasia, di jεnεtik chenj de mek di signal sistεm we de slo dכn bon fכ gro fכ bi ova aktif.
wetin Voxzogo de du na fכ mek di signal sistεm we de mek di bon gro εn kכntrכl di ifekt we di sistεm we de slo fכ gro. in כda wod dεm, dis dכg de inkrεs di "Go" signal fכ di bon dεm we de gro.
Di gol fɔ dis tritmɛnt na fɔ yuz dis mɛrɛsin we di pikin in growth plet dɛn opin, fɔ ɛp dɛn fɔ gɛt maksimal growth. we di plet dεm we de gro, we min se di pikin stכp fכ gro, dεn de stכp di mεdikeshכn. Na yu dɔktɔ kin disayd dis.
Aw yu kin yuz dis mɛrɛsin?
Voxzogo na injɛkshɔn we dɛn kin gi yu pikin ɔnda di skin ɛvride, lɛk di sem tɛm ɛvride . Dɛn mek am so dat yu go ebul fɔ gi am na os.
- di say dεm we dεn kin injεkt: Dis kin injεkt כnda yu pikin in skin. Yu kin yuz yu pikin in shɔl, in bɛlɛ (we de lɛk tu inch frɔm di nɛf), in bɔdi, ɔ di bak pat pan dɛn ɔp an .
- Di tin we impɔtant pas ɔl: Nɔ kɔntinyu fɔ injekt na di sem ples. If yu injekt na wan ples tide, injekt na difrɛn ples tumara. Wi kin kɔl dis `injɛkshɔn sayt rɔteshɔn`. Dis kin ridyus di diskɔmfɔt lɛk fɔ rɛd ɛn pen. Nɔ injekt na say dɛn we gɛt skin we swel, brus, rɛd, ɔ at.
- Wan tin we yu fɔ du: Wan awa bifo di injɛkshɔn, gi yu pikin gud it ɛn gi am wan big glas (lɛk 8-10 ɔns) wata, milk, ɔ frut jus. Sɔntɛnde dis mɛrɛsin kin mek yu blɔd prɛshɔn dɔŋ, we kin mek yu fil taya ɔ yu ed kin tɔn. If yu gi yu pikin it ɛn wata bifo tɛm, dat kin ridyus dis prɔblɛm bad bad wan.
Di doz fɔ mɛrɛsin we dɛn gi pikin, na di pikin in wet de sho. Yu fɔ tɛl di dɔktɔ if di pikin in wet chenj. Yu dɔktɔ go tren yu fɔ no aw fɔ injekt dis insay yu pikin ɛksaktɔli. Nɔ ɛva tray fɔ du dis yusɛf te yu dɔn gɛt da trenin de. Rid bak di instrɔkshɔn liflet we de kam wit di mɛrɛsin fayn fayn wan.
Wetin na di bad tin dɛn we kin apin to pɔsin?
Lɛk ɛni mɛrɛsin, Voxzogo kin mek sɔm sayd ɛfɛkt. I impɔtant fɔ no bɔt dɛn tin ya.
- Riakshכn dεm na di sayt we dεn injεkshכn: Dis na di sayd ifekt we kin kכmכn pas כl. I kin gɛt rɛd, swel, it, brus, ɔ pen na di say we dɛn injekt. Yu kin trit dis bay we yu put kol kɔmprɛs na di say. Mek shɔ se yu tɔk to yu dɔktɔ bifo yu tek ɛni mɛrɛsin fɔ mek yu fil pen ɔ fɔ it.
- Lɔw Blɔd Prɛshɔn: As wi bin dɔn tɔk, i bɛtɛ fɔ avɔyd dis if yu gi yu tin fɔ it ɛn drink bifo yu gi yu di injɛkshɔn. If yu pikin in ed de tɔn ɔ taya, tɛl am fɔ grap sloslo, ɛn yuz sɔpɔt if nid de. If dɛn fil se dɛn de tɔn diziz, tɛl dɛn fɔ sidɔm ɔ ledɔm. If dis sik de kɔntinyu ɔ i de wɔs, go to dɔktɔ.
- Bɛlɛ at ɛn vɔmit: Sɔm pikin dɛn kin gɛt bɛlɛ at (gastroenteritis) ɔ vɔmit. insay dis tεm, gi dεm bכku wata fכ drink εn sכm sכm bכdi, layt it dεm (e.g., krak krak, tost, banana, layt sup). If dɛn tin ya kɔntinyu fɔ de, tɛl yu dɔktɔ.
- Joyn pen: Sɔm pikin dɛn kin gɛt joyn pen. Tɔk to yu dɔktɔ bɔt dis bak.
- Di chenj dɛn we de apin na di blɔd tɛst: Dis mɛrɛsin kin mek di blɔd tɛst we dɛn kɔl alkaline phosphatase go ɔp. Dis na fɔ no aw di liva ɔ bon dɛn de wok. So, i rili impɔtant fɔ kɔntinyu fɔ du blɔd tɛst lɛk aw yu dɔktɔ tɛl yu fɔ du.
Sɔm ɔda impɔtant tin dɛn we yu fɔ no
Aw lɔng i kin tek fɔ mek dis mɛrɛsin wok?
Risach dɔn sho se i kin tek sɔm mɔnt fɔ si se pikin dɛn de gro mɔ ɛn mɔ. Bɔt di tin dɛn we kin apin kin difrɛn frɔm wan pikin to ɔda pikin. So peshɛnt ɛn kɔntinyu fɔ trit am lɛk aw di dɔktɔ se. Di dɔktɔ kin wach aw di pikin de go bifo ɔltɛm.
Udat dis mɛrɛsin nɔ fayn fɔ?
If yu pikin gɛt ɛni sik we gɛt fɔ du wit in kidni, mek shɔ se yu tɛl di dɔktɔ. Di dɔktɔ kin disayd nɔ fɔ gi dis mɛrɛsin to pikin dɛn we gɛt sɔm bad bad sik dɛn na dɛn kidni.
Dis na spɛshal mɛrɛsin?
Yɛs. Voxzogo na wan spɛshal mɛrɛsin.. Dat min se dis nɔto mɛrɛsin we yu kin gɛt na famasi ɔltɛm. Dɛn mɛrɛsin ya na dia dia mɛrɛsin fɔ sik dɛn we nɔ kin bɔku ɔ we kin kɔmpleks. Wan spɛshal we de fɔ gɛt dɛn tin ya. Afta yu dɔktɔ dɔn gi yu dis mɛrɛsin, wan spɛshal famasi go kɔntakt yu ɛn ɛksplen aw fɔ mek dɛn kɛr di mɛrɛsin kam na yu os.
Mɛsej we dɛn kin kɛr go na os
- Achondroplasia na wan jenɛtik kɔndishɔn we nɔto di pikin in fɔlt ɛn nɔto yu fɔlt. Voxzogo na wan mɔdan, apruv tritmɛnt fɔ am.
- Dis na injεkshכn we dεn kin gi כnda di skin di sem tεm εvride. Rotate di say dɛn we dɛn de injɛkshɔn ɛvride.
- I rili impɔtant: Gi yu pikin gud it ɛn wan glas wata wan awa bifo di injɛkshɔn. Dis go ɛp fɔ mek yu blɔd prɛshɔn nɔ go dɔŋ.
- Nɔ ɛva tray fɔ gi yu pikin dis vaysin te yu gɛt di rayt trenin frɔm yu dɔktɔ.
- I impɔtant fɔ atɛnd ɔl di klinik apɔntinmɛnt dɛn we dɛn dɔn sɛtul wit di dɔktɔ fɔ wach aw di pikin de go bifo ɛn di sayd ɛfɛkt dɛn.
- Nɔr frayd fɔ tɔk to yu dɔktɔ bɔt ɛni prɔblɛm ɔr dawt wae yu gɛt.
💬 Comments (0)
No kɔmɛnt nɔ de yet. Ad yu kɔmɛnt ya fɔ di fɔs tɛm.
Ad yu kɔmɛnt